Thinking of stopping all treatment/ meds. I give up

[emjane4465]

I'm feeling very down and irritates. This will annoy some people I know. I hate looking like I do, I exercise eat healthy and no weight loss. My GP surgery including all the doctors are a joke. I have my mum whining about her neck which is a short term problem. I have no relationship as my energy goes into work. I have no social life. I feel so down. I'm fed up of not sleeping and pain. When I take my amitriptyline I feel so angry the next day. Help.

[Julie63]

Hi emjane4465, big gentle hugs. So sorry to hear you are feeling so low. I'm sorry how fibro has this ability to bring us down,even the smallest of things turn to huge mountains. I find amit. a great help, but there are other meds out there, I think your gp needs a good shake to make them listen to your needs & sort something for you. Hopefully, once you get better sleep & pain meds, you will be able to look at life's little iritants with a touch of humour, i know how i feel when i am at a low point. Also, have a long think about work. Is there a way you could cut your hours? Thinking of you and hoping you feel better soon, Julie xxx

[Hidden]

Hello. Emjane

I think we all know how you feel fibro sucks,

The trouble is we all forget how we felt when

We had no medication and what you felt like

Then.

I feel the same what's the point of taking half this

Stuff it makes your brain feel even more stupid, but

You know if you stop you will just feel even worse.

And as for your Mum no one understands fibro not

Your GP or the consultant because they don't have

It, that is why this is so good in here to tell people

Who understands and has the same thing as you

Do, it's not your mums fault really, she just does not

Get it. I don't know how old your Mum is but you

Know people change as they get older and little

Things like her neck to her is a big worry.

I'm not making excuses for anyone, but you just have

To except what you have and that people are not very

Sympathetic, you will learn to say well I'm not going

To die of this so it could be worse, you will get used

To some of the pain. Make the most of what you

Have, at times you will feel down that's part of this

B......d thing we have.

I don't think any medication takes the pain away

Completely, it just helps but if you do t get any relief

Go back to your GP

Hugs viv

[Fibrofoggiest]

Hi emjane,

I agree with all that Julie's and Viv have said, however I would want to point out that you really shouldn't just stop taking all the meds you are on as it can in fact be very dangerous indeed, you could end up with fits and all sort of very unpleasant things, so I would plead with you to consult someone before you stop taking anything. I know you say your surgery is rubbish, maybe think about transferring to a more fibro friendly practice.

Your pain comes right off the page to me and I feel so sorry that I can't do anything other that give you words of support.

This is an invidious condition which isolates us so easily, and it seems to have done so for you, but remember, we are all here to support you through this time. We understand how hard it is, all the feelings that come with the condition and how lonely it can leave you feeling.

I am sending huge amounts of positive healing vibes your way and truly mean it when I say let us know if there is anything at all we can do to help in whatever way we can

Foggy x

[TheAuthor]

Hi emjane4465

I have read your post with a great sense of pain and sorrow for how you are feeling at this time. I was wondering if you were taking any other medications apart form Amitriptyline? As with some of the Fibro drugs, there can be some unpleasant side effects if you simply stop taking them? You really need to discuss this with your GP first.

I genuinely understand how you are feeling as the emotional stress of Fibro gets to us all at some point. I was wondering if there could be another way around all of this, to try to get you the treatment and support that you rightfully deserve?

Is there another GP at your surgery that you could go and discuss these issues with? If not, could you possibly find another GP surgery in your area?

I was also wondering if you could ask to be sent for counselling so you could release all your pent up emotions, fears and anxieties in a safe environment?

Please do not be offended, but I have pasted the phone number for the Samaritans below. I have done this out of concern and friendship for a fellow member and friend:

Telephone: [phone]

They are open 7 days a week, 24 hours a day.

Please do not be afraid to reach out and tell them exactly how you are feeling when you get so down, everything you say will be in the strictest confidence.

Please keep us all up to date with how you are getting on?

All my hopes and dreams for you

Ken x

[Artyrosie]

My heart goes out to you because all of us know what it feels like to just want to give up. BUT, and its a BIG one .... the problem with this illness is that there's very little anyone can do for us, some things help, a bit, but nothing helps a lot and nothing will change the reality of it. So ... its up to each one of us to CHOOSE how we live with it. You can let it get you down, lie down and give up (and there will always be days when you want to) ... or you can choose to make the best of it, be half full and not half empty, and use what energy you can muster to make changes in your life, and work at making it into the best it can be. I stopped work - I had to, there really wasn't a choice - but maybe you could go part-time? There IS more to life than work, though life on benefit isn't a barrel of laughs either. Its about doing what is right for YOU, and making the restrictions on your life work for you - and what works for you may not be right for anyone else, and only you can do it.

So if your doctor is no good - either campaign and bombard him/her with information to get understanding - or (easier option) give up and CHANGE to someone else. Its not hard or complicated to do. I had to give my family information sheets about how Fibro really affects me, and even then it has taken years for them to understand. You see it isn't visible, so you have to explain.

I do hope this helps - a positive attitude really makes all the difference! When you have one you are still in the same place but facing in a much better direction. Try it, it really works.

[Ginsing]

Hi Em, I hear how lonely you feel at the moment . So firstly I send a gentle hug - sometimes knowing we are can be a support to you. You say after taking amitryptline you feel very angry the next day. Does the medicine take away some of the pain, does it help you sleep? Perhaps if you are feeling such aggression the next day the medicine is the wrong one for you. So make an appointment with your GP and go have a chat with him/her and see if there is something else instead. Amytriptline does not work well for every one!

Everyone has tried to offer you so much help that I am going to shut up.

I am here if you need a chat you can PM me xgins

[jillylin]

Gentle hugs sweetheart. I think most people just don't seem to understand what it is like to live with Fibro.

Amiriptylene doesn't work for everyone but there are other things out there. Could you ask your GP to refer you to the Pain Clinic? I found that is where I got the best support and they also helped sort out medication, etc. It's certainly worth trying. I also accessed extra CBT help and got put on a Fibromyalgia Management course which was a fantastic help.

Please don't give up. It may be you are also coping with depression and you can get help with that as well If you are not happy with your GP, maybe time to change and try another practice?

Very gentle hugs

Jillyxx

[fenbadger]

agreed to all the above. It may be really bad to stop Ami cold. You probably built up to the present dose slowly and need to do that in reverse. Bu please see your GP first, joke or not. You have the right to change GP if it's that bad that may be an option. Is it the ami making you angry or frustration because you take it? I'm no medic so take this with a pinch of salt. If I say I've not heard or read of that side effect I will be corrected within minutes. I don't recall seeing it on the leaflet. If it is doing that then yes, you may benefit from a change of meds, there are loads of choices your GP should be able to use. You have quite a raft of thing to go on.

You sound really fed up. I wonder who's that lovely girl in your avatar - Which one is you ?

Losing weight is much more difficult than the organisations would have you believe - and there are reasons for that. Last year I had a patch where 8lb went quickly but otherwise I'm losing about 4lb a year which seems insignificant but is better than going up. We'll be here all day if I go into the whys and wherefores. With pain like you have, exercise seems difficult and lees effective - I used to cycle 40+m a day, now that's down to 10 and slowly.

Like you I have little social life. By the time work is over, there's not much energy left and I want to keep hold of what spare time hobbies I do have, and even then I have to plan carefully how I use the time and energy.

You have a right to let off steam and I share your frustration with people who seem to have little to worry about. My mum's the same. Plays to an audience. Nevertheless Vivien's right, older people get more worried about minor things and minor things to us get more important to them as muscle wasting and maybe osteoporosis and the aches and pains and slowing down of ageing take their toll.

I hope you get some quality sleep soon and some pain reduced times. Gentle hugs

[honyman]

Hi there sorry to hear you are so low not all tabs work for everyone and it is a long time to get it right .If you feel that your doctor does not understand how you feel change.I was the same changed doctor who put me on a different med now feel life is worth living still get pain but just have a better out look and it is true there is someone worse off than you . My wife had lupus in pain all her life but was allways upbeat and smiling I think if she could do it so can I just enjoy the times when you can and don't let life grind you down all the best hope you feel better soon

maurice

[Reykua]

Hi Emjane4465,

I'm so glad you submitted this post. I actually did exactly what you mentioned six months ago. I gave up all my meds and just stuck with the alternative therapies I'd researched and heard about.

To be perfectly honest, I stopped cold turkey and actually felt better for the first ten days to two weeks. After that, I started to feel really bad, really quickly. I still stubbornly held onto my decision as I was so very fed up with taking all those meds and not feeling even half way as well as I thought I ought to so I wasn't prepared to listen to anything.

Just to ensure that I was being responsible for my own actions, I telephoned my GP to inform him that I had come off all the meds. He spoke to me a few times in an attempt to persuade me to change my mind, even offering to review my meds and reduce the quantity - removing those he felt I could potentially do without. I still resisted. On his fourth and final call, he told me that he thought I was clinically depressed and effectively threatened me with being Sectioned if I didn't come in to see him to review the meds and resume taking them.

I ignored all his pleas. Finally, about three weeks into this situation, I suffered quite serious palpitations and had to go to A & E. While there, my GP was contacted and informed of the situation. Now, people say alot of negative things about the NHS but I must say, it was absolutely wonderful that my doctor came down to A & E to see me - we had a long discussion and I agreed tearfully to go back on some of the meds on the understanding that it would be regularly reviewed. He also immediately set up a range of support including counselling, Managing Your Condition Workshops, appointments at the Pain Clinic and I had to go from Amitriptyline to Cymbalta (Duloxetine) with immediate effect.

To be honest, I was very low and very tearful most of the time for the next six weeks to two months but things have started to gradually improve and I think it's because I'm finally coming to terms with the fact that it is unlikely that I will Ever go back to being as I was - that was the old me. I now have to be a different person (limitations and all) and do all I can to live my life to the full - Creating a New Me.

Sorry I've written so much. I really hope it helps. Other's have given some brilliant suggestions which I hope you'll take up. Please don't feel you're alone in this - it's natural to want to take charge of your life and regain 'Control' over your situation. The most difficult thing for most of us is to acknowledge that the situation we find ourselves in is something most of us find difficult to come to terms with.

Make your GP your Partner in this journey. I feel particularly blessed to have found a wonderful, gentle and considerate one and hope you will be as fortunate.

Stay strong, Stay positive.

Fight the Fibro!!

[pottyness]

it doesnt annoy me. i hate amitriptyline too . its put two stone of me... i hate 'this me' too. but i came off it. bog all happened except i got no sleep and woke in a ball of pain when i did...my feet swell and ankles were stiff and horrid.. so a new nasty to add to my bag of shite.... so i went back on it... and put another stone on... bearing in mind i hadnt lost any.... not happy.im now on 25 ml dosolopin and 25 of amatriptyline. i havent put any more on but i am not magically cured either. its hard to fight this nasty ninja nuisance as no one but me can see it without kind friends showing you old pics of you smiling happily much much slimmer.... when i say that was before the illness got hold of me by my throat,then they suggest a new and exciting diet or supplement or exercise............................ and i quietly go home and scream. id thought all this time they had 'got it'. and while i am joining in the moan how many of you are sick of friends finding a new cure via the internet that, if i am not already taking then i must not be trying hard enough.... rant over. bad nights sleep poorly dog and ex husband has taken the kids out to enjoy the sunshine...... sorry emjane

[mub40]

I feel exactly the same.I have also played with giving up all medication,because of the way I feel and look.But Im not brave enough.I absoloutely hate the way I look.My G.P gave me information for change your life.What a waste of time that was.I went expecting some help and support.The lady did not weigh me as she said people don't like it!

Her 1st words were Im not a nutritionalist It came about I knew more .We went through my diet and the only thing she could could come up with was that I used butter (very infrequently)and should change to one of the awful butter like products.She also offered me a free gym pass.I was sat there with my crutches which I have to use full time!!!! So I will be having another chat with my G.P. next time I see her.I have no social life and I am sick and tired of being sick and tired.Im sending gentle hugs and positive thoughts to you.

[Weelamb in reply to mub40]

Just red ur post there, ur doc thinks the same as my doc, how freaky is tat! Yes they reckon exercise cures all, lol I wish, wudb great if I cud walk never mind run a bleepn treadmill!

[Hidden]

Hi emjane

I'm sorry to hear your frustrations with the illness and medications. I must say that it is not recommended to just stop taking medications because it can, potentially, make you even more poorly Speak to your GP first about it so you can wean off medications properly. Speaking to your GP also keeps them in the loop regarding your health and emotions, remember our doctors see many patients and they need us to inform them that something is wrong Then you can both work together in finding the right solution for you, pain management might be useful to you.

Maybe amitryptyline isn't for you, maybe something else is, so please have a chat with your doctor

This link takes you to the FAQ - My current medication doesn't seem to be working, what treatments are recommended for Fibro?

healthunlocked.com/fibroact...

I am wishing you wellness and some relief and sending some healing fluffies filled with sunshine smiles

xxxsianxxx

[emjane4465]

Thank you everyone. Much appreciated. Just this extra support on here helps so much. My consultant at pain management tells me one time scale and the receptionist another. It seems a long time ago since my December treatment. Today I am achy I will admit. I am swimming 45 minutes a day at the moment. It's just been one of those weeks where everything gets you down. I'm a social worker so I'm helping people worse than me. I love my job but I have days where I'm tired. Need the 26th to hurry up lidocaine infusion or steroid injections .... Il find out when I get there again. Always change their minds. Thank you again xx